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» Acupuncture advice please
Yesterday at 11:27 pm by infinitelywondering

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


Newbie to the site

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Newbie to the site

Post  Ksa on Sun Jul 30, 2017 12:16 am

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my marriage. My husband has been put on a roller coaster and has tried hard to understand all of this, but I am better, but not cured. I have had so much pain during intercourse, im so uptight anytime the topic comes up and worried about if it will hurt or not, I pretty much err on the side it will.

I struggle to understand why this effects so many of us. I have to use vsnicream soaps, dye free and fragrant free everything and the slightest thing will set me into a dermatitis nightmare for days... then comes the lidocaine. The only thing I can even think of that changed anything about my vagina was my Leep procedure when I had cervical cancer.  Anyways, thanks for letting me rant.

Ksa

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Re: Newbie to the site

Post  Hopeitworks on Fri Aug 04, 2017 6:24 pm

HI KSA,

I am new to this site just like you. I am not new to vulvodynia though.... I have had it for years and I also had a LEEP procedure done. I have been married for 18 years and I dont know how my husband deals with me. All I ever talk about is my v and how I hate it. He is a patient man. 7 days ago I went through with the vestibulectomy and am praying it works. Do any of the creams you are on work? I am so nervous about using anything down there due to side effects. I believe this condition is linked to hormones and nerve endings, but no doctor will listen to me. The reason why I think it is connecting to nerves is because I get burning skin on the front of my thighs for no reason. It feels like I have sunburn. They have to be connected in someway. Have you tried a nerve block? I am going to demand one if the surgery doesnt work.

Hopeitworks

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Re: Newbie to the site

Post  Jan1959 on Mon Jan 29, 2018 2:55 pm

Hi, I am a new Member.

I have had Vulvadynia for 16 years. I saw many Gynaecologists and Professors, I have seen 3 Pain Specialists and used to go to vulval pain clinic.
The Pain clinic signed me off 5yrs ago after telling me, I probably know more about it than they did and I’m taking the only Treatment to control it and there is nothing else anyone can do for me. It’s a Roller Coaster ride, some days it’s Dreadfull and some days not so bad.

I have not worked or had an income in 15yrs due to my Condition.

It ruined the Relationship I was in at the Time and although I have met and Married a Chap since, Sex is a thing of the past.

I am 59 this year and the thought of Old Age with Vulvadynia is worrying....

I have never met or spoke to anyone else who has Vulvadynia and I’m hoping to meet others like me to exchange Views and Tips and generally talk to another Female who actually gets what I’m saying ????

Jan1959

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Re: Newbie to the site

Post  ryn207 on Thu Feb 01, 2018 3:42 am

Hopeitworks- are you using any steroid creams? I know one that I use thins the skin so when my thighs get some on it they hurt and feel really sensitive. That being said I definitely think that vulvodynia is connected to nerves. My dermatologist explained to me that it's kind of like the aftermath of shingles. Everything can "look" fine, but you still feel pain/itching when you shouldn't.

Jan1959- it's so hard to find the right doctors who actually know of conditions like this. I do love this website because it's so hard to find others who know exactly what you're going through. What are some of the treatments that you tried at the clinic?

ryn207

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Re: Newbie to the site

Post  Jan1959 on Thu Feb 01, 2018 9:49 am

Hi Ryn,

I take 50mg Amitrptalyn every night and I sleep 10-12hrs a night as a side effect. When I get a flare up I use Lidocaine Gel 5% it’s the strongest in can get in Uk from Dr.

I never use Soap or Washes of any kind as I try to Avoid BV and Thrush as much as Possible. I’m at that Age where ICU are a Problem and I’m trying out Alkaline Waters at the moment to see if I can de Acid my Urine a bit....

I buy Coconut Oil and I mix it with Pure Dead Sea Salt, which I use as a Scrub to Bath in. Its works well, isnt expensive to do and I mix it fresh every time I Bath.

I have had Vulvadynia so long it’s part of my life and I try to just get on with, it’s not something you can Talk openly about and my Husbands Family just act like there is nothing wrong with me.

I had a Hysterectomy at 29 for Endometriosis and hav3 no Family of my own.

I had a Laparroscopy and they removed my Ovaries and a lot of adhesions after I got Vulvadynia, thinking that was the problem. Didn’t Help.

I also had a miss shaped Bartholins Gland which was Filling up causing internal Cystes. They Drained it 4 times then Removed it. This has left me with Scar Tissue which sometimes Throbs.
They told me that got all the Gland they could find but it Didn’t Help my Vulvadynia.

So I have had 7 Ops in 7 years during the 16 years while I have had Vulvadynia so I appreciate how hard it is for those going under the knife in an effort to try to get Better.

Jan1959

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Re: Newbie to the site

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